Life after Traumatic Brain Injury

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I can sense Autumn in the air, I can smell it. We had a glorious Summer, which served as a battery charger for me but also gave my anxious brain opportunity to worry about the damage we are doing to our beautiful earth. Too much heat, not enough water, it’s time to drop those selfish habits folks.

The last time I left the house and went further than the end of the drive was the 6th July. I dipped outside briefly in this time, not often, to check on my veggies and catch some sun but every single step drained me. I’ve been in bed for over a month, the longest most testing time I’ve had for years. I always knew my recovery would peak and trough but I thought at least that those long dark days of despair were much reduced. How wrong I was, it’s like my brain knows when I’m too comfortable and decides to remind me just how out of control I am. Maybe it’s a pattern that will repeat until I JUST BLOODY LEARN to stop dropping into old habits, or maybe, more realistically it’s the nature of living with a brain injury. Funny that I can STILL forget that sometimes.

So the past month has been spent in partial darkness, listening to paranormal podcasts, staring at the ceiling and crying. I was at points, at the very edge of my mind, hopeless, frustrated, scared, in that liminal space between living and ceasing to exist. I’m slowly surfacing once more, there’s a gentle coming together of mind and spirit that is one of the most hope-filled feelings I’ll ever experience. I thought that was it this time, I wasn’t coming back, so when you do the relief is palpable.

What can be done at these times? To be frank, not much. I accept what is happening and let it do it’s thing. I know it eventually passes. Aside from that I rest, I rest like a sloth taking some time off. This is all that helps, I am too fatigued to move so anyone who tells me I need to have a short walk to energise myself is told in no uncertain terms to eff off. It’s more than enough for me to make sure I’m not peeing myself. I’ll say this louder for those at the back HAVING FATIGUE AFTER A BRAIN INJURY IS NOT THE SAME AS BEING TIRED. Oh to only be tired!

Now, taking time out from the world to fully rest is not ideal in some aspects, it’s a long time out of action, things go undone, life gets unlived and you become dissociated from everything. I didn’t know what day it was and when I looked in the mirror, it took me a while to realise that it was me looking back. Due to the insular nature of this aspect of recovery, I also don’t reach out to people. A time when I need it more than ever. There’s a few reasons for this, one being that I’m just too knackered to interact but also there’s the fact that there’s nothing anyone can do so I don’t want to bring anyone down with me. I realise these are just excuses I tell myself to avoid being vulnerable and believe me, at these times, I am massively vulnerable.

I ended up emailing The Samaritans, it was a strange experience. Useful but also somewhat robotic. It helped me through the hump but also made me think about how despite writing this blog and attending psychology I’ve still never shown the guts of all this. I’ve never fully raged about how devastating this TBI has been. Showing such depth of emotion can make people uncomfortable, they don’t know what to say or do and can often say things that make you feel invalidated so you end up not bothering.

I think next time I’m alone in the house I’m going to scream my lungs out. I’m going to shout every single swear word I know and expel that energy that is swimming around in my tummy and chest. The thing I have noticed about this layer being removed though is that my passion for music is back. I am more focused and determined to play guitar and sing again. More so than I’ve ever felt. Maybe it was just waiting in hibernation ready to be catapulted outwards.

I’ve not really been in a time or headspace to write any posts recently. Lack of inspiration, lack of energy and a tsunami of ‘life events’ have prevented me doing anything else.

Firstly it’s May and someone needs to tell the sun that. We are having small breakthroughs of nice weather punctuated massively by grey, drizzly, cold and miserable shite. This does not help my mood or my energy. At all.

Then there’s been family stuff, exam stuff, legal stuff and the biggest humdinger of them all was 2 months ago when our landlady told us with regret that she is selling the house we rented. As we all know with the ‘law of the way things are’ stuff happens in life ALL AT ONCE. Pre injury me would don my uniform and fire fight with the best of them, with a POW and a CRASH I’d see off all enemies and then go and have lunch. Post injury me and my brain just says “aw dude, this IS NOT what I’m down with anymore, I’m just going to go and nap”. My reserves deplete very quickly and I’m zombie braingirl shuffling through peril whilst looking for a hiding spot.

As you can imagine when we were told that the house was going on the market, I just crumpled, literally and figuratively. I sank to the floor and cried my little heart out. It brought out all my feelings of vulnerability, of feeling unsafe and at the mercy of the world. I was losing a magical place where I could heal and feel safe, a place that held me when I couldn’t hold myself and where me and Mr Braingirl loved enough to get married in the garden. I needed time to process and adjust, change is not an instant thing for me now, I have to wait for my brain and my energy levels to catch up. It took me about a week of feeling melancholy and paper thin before I could activate myself and then we had to solve the problem of finding somewhere new to live.

Whilst this was going on all the other stuff began to pile up too. Things that required instant action and an abundance of energy. Hahhaha yeah right. I tried to chunk thing up into steps like I was told but when everything needs your attention all at once it’s kind of difficult. So I did the only thing I could do, grit my teeth, rest whenever I could and get on with it. I was also heard muttering to myself on a regular basis “this too shall pass” this was the only way I could stem the overwhelm of everything in front of me.

So you find me here, in my new house after 2 months of packing and stressing and being sad. A new house that is in a lovely place with mountains and forests and a garden I can work in right outside the door. So moral of the story is even the tough stuff can sometimes be for the best. I tested my mettle in a big way and found some of that old fighting spirit I used to have in bundles. Don’t get me wrong. I’m exhausted and not sleeping very well due to not being relaxed and having my brain whizzing. It may take me a good while to get back on my feet again and there’s still stuff to sort out and things I have to do but I got a big shock and upheaval and I’m still here, breathing. My hair is messy and I’m a bit smelly but I’m here.

Suggested track: I jut wasn’t made for these times – The Beach Boys

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This is my June post, very late in the month and not what I intended it to be. I had an outline of a script written for a video but I’ve been defeated by fatigue. I wanted to get something out there though so I’m just writing where I’m at today.

I’m fed up today, I’ve been fed up for the past three weeks. I’ve been fatigued for the past three weeks. Minimal activity, days and days of sitting in bed in my pyjamas staring at a screen watching reruns of tv shows that won’t tax my brain. I’ll not lie I’m demotivated, overwhelmed, sad and really really f****d off.

This is the thing with brain injury, initially it defines you completely, you are each other. You lose who you are and become one with the TBI. This then subsides into a more cooperative existence, you know each other are sharing the same space and some of the time can rub along together quite well.

THEN THIS HAPPENS

This descent into fatigue, this life stopping, mood changing and all round annoying aspect of my brain injury. I said on my support group the other day of all the things that my brain injury took, I miss my energy the most. This is true, without energy EVERYTHING becomes difficult. It’s also a time when you realise that to some degree you are still defined by the trauma. What happened to me over three and a half years ago still runs the show, it’s not as strong as it used to be but overnight it can firmly and stubbornly put the brakes on.

There’s been a few triggers; hospital appointments, general busyness and then the current political state of the UK. I don’t want to talk about it too much here but the recent vote in the Uk triggered my Post Traumatic Stress. The feeling of being vulnerable and unsafe combined with the catastrophising on social media and the terrible rise in racist incidents sent my brain into an exhausting and fear filled panic spiral. I can’t stop this happening, it does it all by itself. What I CAN do is accept that’s how I feel right now.

I KNOW it’s part of recovery, I KNOW it will pass, I KNOW it’s for my own good but can I just say right here right now in this moment I hate every stingy, mean, exhausting and boring minute of it. I hate being stuck and trapped, I hate feeling my brain literally shut down after ten minutes of any concentrated effort. I HATE IT, I HATE IT.

There’s a certain expectation to be used to this by now, to just go with the flow. Well, I am used to it but I still hate it. I do go with the flow, but ‘going with the flow’ doesn’t mean denying my anger and frustration. As I sit here with my ears constantly clanging with tinnitus, my eyes leaking and my brain just refusing to connect up, this is TBI nearly 4 years on. This is my reality. This is the time to rage against what’s happened.

So I’m resting, switching off, avoiding social media as much as possible, eating well, drinking water, trying to connect both sides of my brain up and waiting this out.

And then, one morning soon, I’ll wake up and be able to get out of bed. I’ll have energy and joy. I’ll be able to read a book or have a conversation without feeling like my body wants to shut down. I’m telling you this because each subsequent episode of fatigue is a launching pad, it’s the hibernation period before you take off into your next chunk of recovery and this is what’s waiting for me at the end of this tunnel and this is what keeps me going, I hope it keeps you going too.

All of these are words I use on a regular basis. When people ask how I’m doing the response is usually one of the above. Brain Injury and fatigue are common bedfellows. They are a frequent and inevitable Tango that dance through the daily life of a Brain Injury thriver.

Up until approximately 24 hours ago I was in denial about my fatigue, it has taken 31 months for me to stand up and say “hello I’m Lauren and I have a fatigue problem”. This may seem like a strange thing to say after so many posts on here mentioning my fatigue and it being such a presence in my life for so long, but yes there was a part of my scrambled egg brain that despite evidence to the contrary, decided that my fatigue ‘wasn’t that bad’.

I knew I got tired but what I didn’t see was just how low my baseline energy really was and just how much impact ANY activity had on my fatigue levels. After another particularly bad run of what I termed relapse, the light went on that all these episodes were fatigue related and it’s about time I started to take it seriously. The fatigue presents to me as tinnitus, glassy eyes, emotional lability (no control over my emotions which generally leads to crying spells), low energy, helplessness, ‘what’s the point-ness’, aches and pains, craniotomy scar based thuds, zero motivation, zero excitement, fear, anxiety, dizziness, jitters, nightmares, sleep disturbance and all round just damn well fed up. Trying to do anything with all that going on and I can understand why life becomes a drag. When the fatigue is below the base line it has a knock on effect to everything else. My anxiety and sadness worsen, my apathy digs in and all becomes lost once more. This is why it’s so important to manage it more effectively.

I’m basically having to go back 31 months and start again, look at this fatigue business with fresh eyes. I have to accept even on ‘good’ days my starting level for energy isn’t actually all that high. So from waking anything I do depletes me, that includes brushing my teeth, showering, walking up and down the stairs, surfing the net, talking, daylight, most sounds, reading, thinking, driving and well, ABSOLUTLELY EVERYTHING. Add to that any outlying events like visits to cafes or from family and the fatigue becomes overwhelming. My family visited a week ago and I spent a lot of it crying, fun eh?! Sleep doesn’t ‘top up’ brain injury folk as much as everyone else so even a good sleep doesn’t stave off the effects of fatigue for too long, it can certainly make a difference but the fatigue is insidious and creeps slowly in. This has been another huge lesson for me, I was floating around thinking ‘sure, I get tired but going upstairs a few times doesn’t affect me, nosiree’ and the old favourite ‘I just need a few good nights sleep’.

In most articles I’ve read about fatigue after brain injury they mention two types – mental (confusion, word finding problems, not following conversations) and physical (tired aching muscles, no energy to move). I’ve also seen Psychological fatigue (depression, anxiety, ‘I can’t do this anymore’, no motivation) mentioned but I would also like to add a fourth – hormonal. Hormonal fatigue is when I’m pre menstrual, I used to get tired pre brain injury, now it’s like a whole new level of soul weariness. Looking at all these factors it’s no wonder I’m worn out!

After finally reaching the point of being tired of being tired I’ve decided to look fatigue in the face and take it on. Properly. My first task is to embrace it, I have to acknowledge its existence before I can change it, so with some resignation I am willing to accept I’m not the same as I was. Secondly, I’m looking for triggers, what drains me the most? Are there times of the day it gets worse? Also what signs do I need to watch for that show me fatigue is on its way? I’m looking for the signs then taking myself away for 10 mins to breathe and recharge in the hope that little and often works better than the famine and feast I’ve been having with my energy levels. I also have a fatigue diary where I write everyday what I’ve been up to, how my sleep was, any signals of fatigue and any rest I’ve taken. This will help me root out the big energy drains. To help me in a more kinetic, visual way I’ve got a chalkboard up in the kitchen with batteries drawn on it that get wiped as the day progresses so I can see my energy running down and know how much is left in the tank before I have to stop.

I’m hoping that implementing new strategies will lift some of the fog of fatigue and enable more consistent activity. I’ve been told that as with most things in brain injury it won’t be a straightforward process, it’ll be up and down and backwards and forwards and some days will seem like mountains. This time though, it’ll be a mountain I can finally, slowly and steadily get to the top of.

In the time since I last wrote I’ve grown another year older and experienced another turn on the merry go round of mental health. I have been pondering this post for a few days as there were a few topics I could have written about and seeing as though I’m kind of on an upswing right now it’s often harder to write about the BAD THINGS so I thought I’d look at a subject that has come up many times, not only to myself but a common story heard across the board from TBI survivors. It is ‘things I was/was not told about TBI when leaving hospital’ AKA

Things I was told when I was in hospital

You are in hospital
You have had brain surgery

and erm…… that’s it!

Things I wasn’t told and would love to have known in hospital

What had happened to me
What my operation consisted of
What healing FEELS like (that zaps, tingles, aches, tenderness and tightness are all normal)
That depression will frequently swing you by the ankles to the edges of your mind
Ditto for anxiety
That you WILL grieve and that you should let that happen (crying every day is ok)
That you will experience fatigue like you’ve never experienced before (think batteries out and staring at the wall)
That you will be in and out of your GP like a demented jack in the box convinced you are sick sick sick
That you wont sleep properly and dream for MONTHS
That it may be worthwhile getting a hormone check as your Pituitary gland may go wonky
That you will feel very isolated and lonely
That it takes an inordinate amount of time to heal
That there is a very capable and amazing Brain Injury team you can access via the good old NHS (I found out myself after struggling for months with all of the above)
That you can access Brain Injury Matters for all manner of help

but most importantly that all of this is NORMAL and YOU WILL BE OK eventually (I can’t state this enough!).

This is just my list, there are many people with similar lists, they may be longer or shorter or contain a myriad of other stuff. The thing we all seem to have in common is we knew NONE of this as we embarked on our new journeys. I’m not writing this to scare fellow TBIers, I’m writing this to prepare you. To show you the reality and enable you to get your tool kits ready. I’m lucky to have an awesome and understanding GP who sails through this with me. A great psychologist and assorted others through the Brain Injury Team. My point is, if I had been told even just some of this on release I would have maybe dealt with things easier and they wouldn’t have reached the boiling point they did. I really do think having Brain Injury survivors in hospitals to talk to patients, to put together an essential ‘survival’ leaflet given to people on their way out of hospital would be an enormous help. I know Brain Injury is different for everyone but something just saying you MAY experience these things is useful.

I don’t want this to be just a negative post though because there are positives, like being eternally grateful for the surgeon and the subsequent stream of help via health professionals I’ve had since. But more importantly the lessons, the things that can only come from something like this.

Lesson 1

You reach a stage where it does no good to talk and think about it anymore, this is a good stage, it’s a moving forward stage and it’s a great feeling.

Lesson 2

I learnt just how strong I really am. You get many points where you feel your reserves are gone, the battery is dead and then from nowhere an extra tiny bit of ‘something’ gets released and you get through whatever it is that is making you want to curl up and go away. This is endless and boundless and is your greatest ally. It’s also something I am immensely proud of, strength and courage are not to be underestimated and even when you don’t feel strong and courageous – YOU ARE!

Lesson 3

There are certain things that just don’t matter anymore. They will be different things for different people. But I no longer worry about money or status or careers. They are piffling little insignificances and I feel liberated as a result. I know what I DON’T want anymore.

Lesson 4

Life is ultimately pointless. It really is. Honest.

But the difference between worrying about that and accepting it with a smile is THE most freeing thing I have ever gone through.

Weekends huh? Weekends are supposed to be fun aren’t they? But when you have no discernable ‘week’ then the weekend is just another pair of days that drag into each other.

My weekend has been spent fighting my trio of enemies

Days like this are boring, stupid, exhausting, pointless smelly poo bums.

Days like this make me rage against the world and myself.

As a result I have done nothing of note, this bugs me. It bugs me to my very core. I like doing things. I also like not doing things but it would be nice to have the choice. I think that’s the issue. Having choice taken away is very disempowering, it feeds the cycle of mood, feeling and outcome I have going on. The self fulfilling prophecy that takes up all my thinking time and wont just bloody go away! So this is where Braingirl has to put on her cape and fight, even if it seems to be the same fight over and over again.

I will eventually break the cycle, I will, like a freed battery Hen feel the sunlight on my face once again.

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I’m sat here writing this and my eyes are drooping. I’m tired. So very tired. Recovering from the lurgy and having hayfever isn’t helping but it’s my brain you see.

My brain is making me tired. This is because I’m ‘brain injured’ (those of you who know me may argue I always have been). I have what is known in the business as a Traumatic Brain Injury (TBI). Now it takes a lot for me to say this as I don’t want it and it sounds quite big and scary. But 8 months in I have to embrace it. I’m finally getting some professional help, help that I should have got when I was discharged.

I had an appointment with Headway this morning and I’m waiting on a psychologist and OT this afternoon. It’s weird for me to be on the other side of assessment appointments, being told about confidentiality and all that jazz. I have to stop fighting that I am disabled and that I am now a service user.

It’s a relief to be finally accessing support, a relief for myself and my partner (he needs a break). I can finally get answers to questions and hopefully see off the black dog. I’m assured what I’m experiencing is normal and that I’m going through a grieving process. I’m mourning who I was, what I’ve lost and the potential in my future. That’s hard, it sucks. I now have to reassess everything and figure out a new path. You see people look at me and because I look normal (ish) it’s hard for them to know what’s going on underneath. I look healed but I’m not.